Download 053 - Healthcare recipient - DOCX 17KB

Submission on new eHealth system – PCEHR/HI paper feedback
Opt in, out or …?
A deciding factor for many, would be how much control they have over the content of
their record, and how much access to their records is available beyond their direct
medical providers.
If given clear assurances about their ability to control information that may give rise to
future difficulties in correct diagnosis and treatment, I believe most would opt in. The
following may help
.
Not all information is valuable in the long term
Information such as current medications and known adverse drug interactions are vital to
proper health care. However, other information may be detrimental if the patient is
unable to have some input.
Provisions should be made for deleting information that is simply historic but has no
present or future use in medical diagnosis and treatment. Beyond this some flexibility for
patients to control the content of their personal records is needed.
Some reasons follow.
1. Current medical practice means that doctors often do not received accurate (or
any) feedback on their diagnoses and treatments.
For example, the passage of time alone may have been the effective treatment, rather
than the doctor’s script. However, the original diagnosis and treatment remain on the
record whether correct or not, and the treatment may be repeated if it was believed to be
effective initially.
2. Sometimes a misdiagnosis is carried forward and not corrected.
If a patient cannot have this amended by their current doctor, it becomes necessary to
‘get a second opinion’. If the original diagnosis is online, this may not happen, especially
if the original doctor is highly respected, or has specialist qualifications. The online
diagnosis would be assumed to be correct. With an “e-record” following the patient
everywhere, incorrect information of any kind may cause problems for the patient,
especially if a new diagnosis is required for effective treatment.
3. The individual needs to have full personal access to his/her own records so that
simple errors of fact are not accidentally included.
Anecdote
A female friend has exactly the same name, and suburb as another woman. They both
attend the same clinic. My friend always takes special care to double check her address
on every contact.
If an accidental cross-up every took place, either (or both) of these women would need
to have their records amended. If the wrong records remained in place, serious
problems may arise in the case of a medical emergency. The only people likely to
recognise errors would be the women concerned.
The need for fresh assessment – a personal anecdote
In the 1980s, while trying to obtain a correct diagnosis of an ongoing infection, I was
misdiagnosed and dosed on antibiotics several times to no avail. I had some ideas about
the origins of my problem but my doctor was unable to hear what I wished to say.
After about three years, I went ‘doctor shopping’ trying to find a better answer, I struck
the same inability to listen, was given further antibiotics, and even sent to a specialist
who wanted to operate on a completely different bodily structure. I said no.
Eventually another problem arose, and while I was being assessed (by yet another
doctor) I mentioned the ongoing infection. I was asked (yes asked) for any history
associated with the problem. After hearing me out, I was referred to another specialist
who operated and finally fixed the problem, some eight years after my first visit to the
original doctor.
Had my original diagnosis, and my doctor shopping been in my e-record, I don’t believe I
would have ever had my problem solved. Rather I would probably have been considered
a nuisance with a mental problem.
I currently have an excellent doctor, but I know my record has one entry that is incorrect,
even though it seemed the case at the time. While it is trivial, I’d like to correct it if my
record goes online.
Personal records should be available to patients at no charge, and record changes that
do not interfere with future diagnosis or treatment should be available for the asking.
Some limits, such as once a year review would keep it from becoming costly and
burdensome.
4. Sometimes even correct information that has no further value in diagnosis or
treatment may become threating by simply being ‘on the record’. For example, a
woman may have had an abortion at some stage, but does not wish this to show
on her health record for the rest of her life, especially if it inadvertently became
known and destabilised her otherwise excellent family relationships.
Anecdote (feedback necessary for learning)
A bleeding incident about a year back led me to have a specialist investigation. Nothing
of concern was found. Since then, an explanation for the incident has been found and
dealt with, but the specialist has no knowledge of this.
Such information could help in future cases (or may simply offend the specialist).
Anyway, there is no explanation in my medical records. No feedback, no learning for
either my doctor or the specialist.
Oh, and please include all mail options
Finally, a process comment. You state that individuals can elect to be notified of access
to their health records by email or by SMS. Ordinary mail should be available too. Not
everybody has/uses electronic devices.
Some people are in fact unable to access them even though they may wish to do so.
This may especially be so for those who are unwell. Please include this option.
Yours sincerely
Healthcare recipient
Victoria